RESEARCH - RA patients want more info and more time with doctor

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RA patients want more info and more time with doctor

Rheumawire

Oct 6, 2004

Janis

Atlanta - A telephone survey of 500 rheumatoid arthritis (RA) patients

conducted by the Arthritis Foundation found that two thirds of RA

patients still suffer daily pain, stiffness, or fatigue despite

treatment with biological response modifiers (BRMs) or disease-modifying

antirheumatic drugs (DMARDs). Nearly two thirds would like their

physician to spend more time explaining their RA medications and to tell

them about clinical trials for which they might be eligible. Results of

the survey were discussed in an October 6, 2004 teleconference by

Arthritis Foundation CEO Dr H Klippel and by the foundation's

medical advisor, Dr Ruderman, who is also assistant professor at

Northwestern University's Feinberg School of Medicine.

The patients' strongly expressed need for more information from

physicians was unexpected. " As a rheumatologist, I was surprised by the

results of this survey, " Ruderman said. " Many of us pride ourselves on

our communication with patients and chose rheumatology because we value

the patient interactions and long-term relationships. The survey calls

into question whether we are doing things as well as we think we are. "

The survey included 300 adults with RA who were taking BRMs (etanercept,

adalimumab, anakinra, or infliximab) and 200 who were taking DMARDs

(methotrexate or leflunomide). All respondents had been told by a

physician that they had RA, visited a rheumatologist at least once per

year, and described their RA as moderate or severe, not mild. The survey

took about 20 minutes by telephone and was conducted by a trained

interviewer following a carefully structured questionnaire.

Klippel said that two thirds of RA patients under treatment still report

significant daily pain, stiffness, and/or fatigue and that more than

half rate their quality of life (QOL) at 6 or less on a 10-point scale.

" About one third report significant fatigue that is not being

satisfactorily addressed, " Klippel said.

The top 3 concerns among patients prescribed DMARDs or BRMs were

long-term health consequences (42%, 45%), increased risk of infection

(36%, 41%), and inadequate relief from fatigue (34%, 32%). " One hundred

percent of respondents would be interested in new treatments for RA that

relieve pain more completely or provide longer periods of relief from

pain. Nearly three quarters of people with RA taking either DMARDs or

BRMs are very or extremely interested in having their treating physician

tell them about new RA therapies, " Klippel said.

" Despite advances in the treatment of RA, the majority of people with RA

expressed extreme concern about their current therapy and routinely

experience symptoms that impair their quality of life, " he added.

Ruderman said, " We are all aware of the time crunch, the reimbursement

issues, and the fact that we don't have the time we would like to spend

with patients. Adding practice extenders such as nurses and physician

assistants might be helpful. Now they are often used for patient

education about RA medications, but perhaps we should reconsider that.

When pressed for time, we tend to focus on specific issues. The survey

might be saying that we are not focusing on the right ones. "

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org